Yesterday was exhausting too but it was for a good reason. I was able to spend most of the afternoon after the doctor’s appointment at least getting the ball rolling on what I need.
I decided to go with the company that said they could be my oxygen provider both here & in Philadelphia.
Originally I was going to use them just for a dry run (which means I get called & have to prepare like it’s the transplant surgery but at the end the organs turn out to not be useable & I am sent home) but this does make more sense.
The other company I had been trying to work with before this all started wasn’t answering any additional questions or providing me any updates on their progress of getting my new equipment, still just asking for basic information. I didn’t get a return phone call or email with follow ups on more questions like if they could bring me equipment in Philly, so I felt more comfortable going with the company that answered all my questions from the start & laid out the pricing. They were very forthcoming with what they needed & I got farther with them in 3 emails than I had in 5 days with the other potential supplier. I do give the other company credit, without them I wouldn’t have known about the NIOV system.
So while I’m limited on things for now, it should only be temporarily.
Hopefully, the insurance approvals won’t take that long, but all of this is fingers crossed.
At least I’m getting what I need to get the ball rolling & there’s movement forward.
The covering lung doctor I met with yesterday was very attentive. He could tell I was on the ball with what I needed & I diligently track what I need oxygen wise for exercise.
I explained that all of these adjustments weren’t just willy nilly it was actually based off of readings from the device that measures my oxygen levels while I exercise (called a pulse oximeter).
So he made sure I had prescriptions in hand for what I needed when I left. I was able to scan these over right away to the new company. I also will have them for any one else who might need them in the event something falls through or there’s a delay.
It was a relief that at least even with the hoops my local doctors office was sympathetic & booked an appointment for the day after they received the fax from my transplant social worker so I was at least able to get things started this week. That was my goal.
I love my transplant social worker. When I explained what I needed in following up with her (yesterday it was asking for a doctor’s letter for my insurance stating why I needed the NIOV), she set forth to get that started for me right away.
Over the past year, whenever I’ve needed an extra hand or ear to solve something difficult, social work has been there to help.
I have good support from my friends through this all & also my parents. I know they all get sick of listening to me rant about these oxygen wrangles. But they all know it’s important for me to get what I need & vent out those feelings. They understand the frustration as well, because they know how hard I work to stay active & how important it is.
I need a supplier that allows me to do that. It’s easier than it sounds. It’s a pain to have to switch so often but I do so not because my expectations are too high, it’s what I need to do to maintain my status & stay as healthy as possible during this wait time.
I will say my experience with my current company (despite the few wrinkles) was still better than my first (which was a nightmare. They refused to deliver to my house so while I was working I’d have to go by the office & pick up bottles or whatever supplies I needed).
It’s just I know my current company can’t provide the equipment I need if I have a dry run & since this new equipment is usually not covered by Medicaid or Medicare I don’t think they’ll offer it to me, so I need to find a company who can handle all of this.
I tend to try to gravitate towards companies who aren’t intimidated about me asking a lot of questions & laying out what I need out front (some are).
I was too tired to exercise yesterday but took a nap & then went to bed at a reasonable hour & slept the best I have in days.
Even though I’m up earlier this morning than usual, I don’t feel as fatigued from the stress as I had been feeling.
I really feel for those people when they encounter problems like these. It’s draining, even when you have a great support system.
That’s why I continue to talk about it in my blog too. I know I’m not the only one who might be having an issue or feeling what I’m feeling. If my venting or sharing helps someone else troubleshoot their own problem better, then I feel good about it.
At least then there’s some solidarity in suckage when it happens…